My Advocate Adventure ~ Part I

I began looking into the Leaders Against Pain program offered by the National Fibromyalgia and Chronic Pain Association about a year ago. I read the purpose of the program and I thought some day I want that to be me.  I was surprised to receive an email a few weeks ago giving me the opportunity to apply for a scholarship to attend this years Leaders Against Pain Conference in Salt Lake City, Utah.

“This program is intended for newcomers as well as veterans to patient advocacy.  It teaches skills for advocating on behalf of millions of people for faster diagnosis, better treatments, more research funding and ultimately a cure for these conditions” ~ Leaders Against Pain

I have just started a new job which meant no vacation time. I asked my Supervisor that if by any chance I won a scholarship if I could have 3 days off of work. Of course, the question I was dreading came out of her mouth. What is it for? I wasn’t going to tell anyone about my health issues at the new job until I had been there long enough to prove myself. So, following a deep breath, I told her that I have Fibromyalgia, have a blog, page and support group. I failed to mention the other 15 comorbids that has been diagnosed.

It is a great opportunity to become a trained advocate.  I completed the very long detailed application and asked 3 of my friends to write a recommendation letter. I read their letters and was near tears. I have always had a problem believing good things said about myself.

I submitted the application on Sept. 8th, 2014 and was happy that in less than a week I received an email Congratulating me and being offered a scholarship.  The scholarship would cover 4 days of training & meals. I would need to take care of travel and accommodations.  I groaned when I saw what time I would need to be at the Minneapolis, MN airport.  I was looking for the shortest layover in Denver with my arrival in Salt Lake City being early enough that I could rest before Thursday nights Opening Social.

Shortly after accepting the scholarship I received my first 4 assignments to be completed within a few days. Fitting in a new job, volleyball games, a High School Daughters busy life, support page, blog and support groups has my heart racing and my head spinning. It felt like as soon as I hit the enter button submitting my replys to questions 1-4 that I received the next assignment.

The next 5 assignments consisted of registering for Trello, Join Me, taking an Emotional Intelligence Assessment, reading about my state’s government(Senators & Representatives), position papers and advocacy articles.  I wish that I could say that I already know who the Senators & Representatives are for Wisconsin but our home is 30 minutes from the Minnesota state border which means the only news I see is out of St. Paul/Minneapolis. I have some research to do.

As the conference time quickly approaches my to do list is growing bigger and bigger. In addition to the assignments for the conference, work has assigned quite a few meetings and tasks before I leave for Utah.

My family has decided to fly out with me and have a sight-seeing vacation while I am in the conference.  There will be no time for sight seeing for me because the meetings run from 8 a.m. to anywhere from 7:00 – 9:00 p.m. I would have loved to have a day to do the Tourist thing and even better a day to rest when I get home but it is not in the cards this time around.

I am beyond excited to be attending this conference. I have this amazing opportunity to be a chance to become a trained advocate helping fight for Fibro Warriors and those suffering from Chronic Pain. I have started feeling overwhelmed wondering what have I done. Can I handle the plane ride, the hotel room, 4 days of intense and the commitment that I will be making for the future.  I went back and read the comments on my support group and page after  I announced that I would be attending. Everyone has such confidence in me.

I thought of all of the obstacles that I have faced in the past years and how many positive things have come out of such negative events. I give the advice to not think “I think I can, I think I can” but “I know I can” I promise to do my best to be able and stand up for all of us Fighting Fibro and the evil sidekicks.

After all that is the only choice because I am and will continue to be a Fibro Warrior~Living Life.   

dragonfly 2

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5 thoughts on “My Advocate Adventure ~ Part I”

  1. Melissa.. Your group was the 1st contact I had w others and this awful disease.. The 2nd was “get out of bed and fight”.. Soon other groups surfaced.. But it was your “Fibro warriors” group that started it all.. It has changed my life from pity to acceptance and finally to fight every day for what others take for granted.. You are a guiding light and do so much for all of us.. You got this!! And do me a favor.. Keep Katniss of “get out of bed and fight” in your heart.. As you know suicide is the devil whispering in our ear so often.. Kat couldn’t stay with us, and chose to leave.. Even tho she was the author and leader of that group.. It still continues in memorium by her admin Bea and her dear husband.. Take her with you in spirit.. She, like you was a guiding light.. We need you to fight and continue your good deeds.. Peace

    1. Patti,
      Thank you so much for your kind words. They come at a time of a feeling of doubt, if I am doing enough or can help others the way I want. I will keep Kat and those who hear the whisper is my thoughts and continue to remind others to fight.

  2. I don’t think you believed me when I told you, you would be my mentor. I am so proud of you. I understand the sacrifice it takes to be an advocate and deal with all the other issues, but I can tell you, the rewards are more than worth it. When we can contribute to humankind, we become one with the universe we live in. Rock on my dear friend, this is only the beginning of a wonderful and fulfilling adventure.

    PS: you can find information on your senators and representative and other advocacy links on my website here.

Looking forward to hearing your comments!